A Woman's Journey With Rare Disease

When Xenophobia Kills

I read this article just now. I don’t even have the right words to put this post together, because I am seeing red. I am devastated for this woman & her family.

I am not a self-loathing Caucasian but I admit when it comes to healthcare I am relieved that I am not subject to certain injustices & stereotypes because of my heritage. Stories like these really disturb me in a deep way. This woman was my age so it also hits home a bit harder.

There are already enough disparities in the transplant system for certain groups without incidents like this being allowed to occur. “Bureaucracy kills” is absolutely the right phrase in this case.

This woman was a U.S. citizen but instead was lumped into the problematic “undocumented” group, without cause. Obviously, they couldn’t bring forth proof (that should have never needed to be brought forth in the first place) soon enough to save her life.

This false accusation was still perpetuated even after it was proven she was a citizen & qualified for benefits, even benefits that she was denied being made aware even even though she was entitled to them. For what reasons? Xenophobia & racism, plain & simple.

This is a case in point where our systems both political & social embracing xenophobia & racism causes immense pain & suffering, even death. Think I’m being dramatic? Read the article again, it’s clear.

This is but one example of such injustices that are perpetuated against people needing transplants, but also other healthcare, illness, & disability groups as a whole. It’s an ugly truth that gets too often swept under the carpet or goes under or unreported.

I will say stories like these do not surprise me (as not much does anymore, sadly) but they do deeply trouble me. Regardless of proof of citizenship aside she was a human being first, a person, who deserved proper care & treatment above all else.

Yes, this is part & parcel of the disturbing trend of the “business of medicine”. Discriminating & withholding care because of lack of ability to pay a deposit that noone should be subject to or could afford, insured or not (citizen or not).

Yet, there’s a larger issue of how we treat citizens of certain ethnicities in this country. Also the often the false assumptions that are made against actual US citizens of non-Caucasian ancestry.

Most of us don’t think this racism & xenophobia has a price. Yet, here’s the case where they clearly & presently do, with fatal consequences when false assumptions are wielded without regard for individual liberties and rights.

There’s no explaining this away as “protecting” Americans when clearly we devalue these American lives.

There’s no justifying these behaviors any more, in any realm or sphere of life in this country.

These types of incidents happen because we have a system that gives way too much power to bureaucracy whether that be hospital (or also insurance) administrators; bureaucrats at other entities who are clueless about the care & situations. Looking only at papers & data, which sometimes can be incorrect or fail to be corrected in time before the damage is done.

I am not going to get political here (though I know it’s hard not to), but I am not going to sit silent & say that this doesn’t deeply make me wish that hospitals, insurers & other bureaucrats could be held accountable for needlessly killing people in these situations (when they occur) though I know they never will be.

It also serves an important lesson of the true cost of racial prejudices & biases against our fellow Americans & people who live in this country.

This is what happens when xenophobia, racism, & profiling are allowed free reign to serve as a benchmark of citizenship.

If corporations are people (& I’m not overly litigious) I hope there is some way for this family to sue the hospital for wrongful death or negligence. Or to bring a civil case of pain & suffering against them because of this ridiculousness. I also typically don’t say this but the person who documented this false assumption (of assuming she was illegal, even though she was an actual citizen) in her medical record should be fired, at the very least. Possibly face criminal charges since it did result in her death, ultimately.

This woman’s wait time most likely would have been very short & she could have been given a new gift. Instead, somebody put an arbitary dollar amount on what they felt her life was worth to even start the process. Even if ultimately, she wouldn’t have qualified for a transplant, she was entitled to a safe transfer & transport to the facility to be evaluated at the very least.

Instead, because of this wrangling over “citizenship” when things finally were corrected she was much too fragile to transfer safely. I had heard that people said she lied. There is no evidence of this, this was only the reason that the family was given as to why the requests were denied.

(We all know that the system is not friendly to those with low health literacy. It’s hard enough for the few of us who work in the healthcare, insurance, or related sectors to navigate successfully when we have to ourselves & have a decent amount of understanding. There’s no way to know from the article if someone made a keying error on a form or she misunderstood a question that could have led to a response that could have led to this assumption.)

That “price of admission” (in the way of the ridiculous deposit amount) is never something that should be done & typically is not done to the “average” American, at least not without some work around or negotiation.

This is a sad commentary & state of affairs.

God speed, Maria Huaman. I hope this serves as an impetuous for examination & change, so your needless death was not entirely in vain.

That was more than painful to read.
I can’t imagine living in a place where healthcare isn’t affordable or people are actually denied healthcare because of their economic and/or immigration status.
I know it won’t bring her back, but I hope her family can sue both hospitals.